Amyschi
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Posts posted by Amyschi
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On 3/9/2024 at 12:01 AM, bumpkin said:
It's like a wave of impending doom that washes over, like your body is signaling something horrible is about to happen to you, but then it eventually passes and you're fine (well y'know, "dysautonomia fine"). But sorry to hear you're dealing with it too, and yeah since they tend to lump risk factors by age I can imagine it's even more troubling, you don't want to run to the ER on a false alarm when you know your body is prone to throwing weird symptoms, and at the same time you're also aware you're not gettin any younger. Don't let it throw you for a loop like that though, as others have said on here in the past: If they get chest pain and heart attack symptoms then they're going to the ER and they're not apologizing for it because they're not taking chances. Really if we could get better healthcare we wouldn't be in this situation to begin with to be worrying and wondering.
I would think it's got something to do with the adrenaline too, because the feeling is very similar to the awful sense that accompanies panic attacks.
And right I read that too, and like TorturedSoul said it's scary because how the heck would we know the difference of whether it's a false alarm or a stroke or heart attack? Dysautonomia and strokes and heart attacks aren't mutually exclusive.. so sometimes when it's really bad we drag ourselves to the ER, only for them to hand us a clean or unconcerning EKG, look at us like we're silly and hurry us out.
Do you get enough time during the day to unwind and rest (like really, really rest)? I know my system gets really buggy and very very panicky feeling if I'm overstimulated from getting hit with too many stressors and spending too much time looking stuff up on my phone (blue light really is bad for us) my body will be completely amped up, my pupils will get weird and everything, I'll hit my limit for interacting and won't be able to handle texting people back for a couple hours.. My last drs followup they could tell right off the bat that I had been through too much the few weeks between appointments. Usually when I get that bad the only thing that brings me back down is vagus nerve stimulation where it literally dials in the anxious feeling and grounds me. I've heard of people doing this at home with an external unit, but I don't know if that's contraindicated by age or medical conditions etc. But trying to stay on top of managing my symptoms and limiting screen time and other stimuli has been helping limit those episodes, where it's not all day for weeks but a couple times a day for shorter periods of time. Still not fun when it happens, but with enough rest and salt water and stabilizing my blood sugar, it passes a little quicker.
Thanks so much, Bumpkin. You understand it completely, and your description is right on. So right about not knowing when and if to seek out help. Wouldn't it be nice if someday they invent a machine you could just hook up to, like a BP monitor or EKG, to let you know whether something is going on that is serious and requires immediate help? You give some very good tips on what has helped you - thanks! Also interesting that VNS has helped. I have read a lot about the vagus nerve as it relates to neck issues, which is a definite issue in my case and I believe contributing. Good luck in your continued journey.
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On 3/8/2024 at 10:58 AM, TorturedSoul said:
@Amyschi I know your question wasn't directed at me, but I have felt the dread, doom, and death feeling on multiple occasions followed by "hyperventilation" symptoms that have sent me to the ER. What the doctors never seemed to understand was that there was something physical happening not psychological. Coincidentally, during my most severe crashes my d-dimer is always elevated so when I go to the ER they always do a CT scan to check for a clot. It almost feels like that could be the cause because it could be a sudden feeling of doom and weakness and difficulty breathing. It always comes out clean. Now I have some information with the testing in Brigham. It's the cerebral blood loss that is most likely triggering these symptoms , but I still don't know why. Why when I stand up am i hyperventilating in the first place? When I lay down I'm not. It's all so overwhelming. Yes I do get worried because I feel the doom and "dying" feeling a lot and I have to stop myself from going to ER. I often wonder if it is something like a clot or a heart attack I would never know the difference. Scary place to be.
Thank you so much - I appreciate you responding! Interesting about your d-dimer results; shows something is happening I believe you are right about the cerebral hypoperfusion as a possible cause - maybe the body is sending out a "panic signal?." What is confusing to me is that I wake up with this feeling around the same time - makes me think it is an adrenaline release. Good luck to you.
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Bumpkin, Could you explain further what your feeling of "dread and like you are dying" feels like?(although that is an excellent description). I have had dysautonomia for many yaars, but have just started getting this feeling regularly for the past few months It is the scariest thing I have ever experienced. It is difficult to describe. I started out waking up with this sensation along with internal shaking and sometimes tachycardia, but now I can feel it at any time of day - it come over me like a wave and definitely feels like something physcial that overtakes you. . Is this what you experience?. I have read too that you should not ignore this symptom and seek immediate help, as it can be the body's way of warning you that something major is happening. I'm sure you are younger than I, but at my age of 65 now, it is more concerning. But Thank you.the fact I have gotten it so often is a little reassuring. My norepinephrine levels have been high in the past, so assuming it is part of adrenaline surge, but just don't know.
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Buddylove, so sorry you are feeling so alone. I am also an older folk, 65 almost. I was wondering if you would mind sharing what you experienced during the panic attack while asleep. I had an experience upon waking up this morning that was truly frightening, and just trying to find someone with a similar experience. I have been routinely awakening with feelings o internal trembling and feelings of anxiety every night like closework between 4 and 6 am, but this morning awoke to a severe case where I truly felt like I was going to die, tried to get up; but had extreme weakness, tachycardia. It is hard to discern what are usual dysautonomia symptoms and what is new- onset panic attack.
To lschwartz, so sorry you are going through this. I have had dysautonomia symptoms for many years and can testify that any strange symptom can happen for sure, but this must be terrifying. I notice also lately that my breathing just feels off and harder - not shortness of breath per se, but just off. One thing I have noticed, and wondered if anyone else has, is that I can no longer drink, through a straw. After a few swallows, it feels like I can't breathe, have to stop and take deep breaths. This also is scary because it is a new finding and there is no explanation. In trying to find an answer, I did read that breathing patterns are altered with dysautonomia, so you are likely correct in questioning whether it is a dysautonomia thing. Wishing you answers.
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So sorry for what you are facing. Such good advice from everyone. Will be thinking of you, and follow up to let us know how you are doing
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On 12/21/2023 at 1:07 PM, MaineDoug said:
Prilosec helps me. Reduces my gastric erosions.
Thank you. Glad it helps you. Can I ask about side effects?
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Well, its one of those days obviously... meant "normal SITTING", but I'm sure that was obvious!
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Pistol, thanks for sharing your meds. I am so sorry those spells lead to such extreme symptoms, causing your disability - they are indeed unsettling, but it is of some relief to have a possible explanation. My GP is starting me on a low dose clonidine, as I don't tolerate meds at all, so we'll see (I need to find a new neurologst I know, and it would be better for them to prescribe, but we'll see). But will keep your combination of meds in mind for reference. Yes, your levels definitely indicate the hyperPOTS. Mine was normal standing, but 953 standing. Not over 1000, but I guess meets the criteria. I went many years without noticing this hyperstimulation, very odd, but it is a bear to deal with in additional to the regular orthostatic intolerance, GI symptoms, etc. Take care.
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Thanks to all for these replies!
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2 hours ago, Pistol said:
@Amyschi My symptoms are similar to yours - I have severe GERD that once caused esophagitis and ulcers. This was treated by meds and maintained with the pantoprazole. I also have IBS-D and off-and-on gastroparesis ( this sounds strange but this is what my GI specialist told me ).
My symptoms are directly related to the HPOTS and the constant stress caused by the high norepinephrine levels is to blame. Other than meds I manage it by rest ( I am disabled ), eating all throughout the day rather than meals and dietary restrictions ( low carb, high protein, avoiding acids and eating cooked or steamed veggies. )
We do sound alike, Pistol. But you have so many GI issues, so sorry. Thanks so much for the good tips. Can you refresh me as to what meds you are on for the hyperPOTS? Also, going through a really hard period, and wonder if you get symptoms like this: waking up every early morning with internal shaking, tachycardia, and extreme anxiety? That then sets up the whole morning. It is like you can actually feel the norepinephrine flowing through? I also have chills and tingling/paresthesias all over, which I suspect is SFN, but have not had the biopsy for this (diagnosed with polyneuropathy). This symptom complex is so disturbing and strange, just wondered if you (or anyone else who might read!) has experienced.. Also wondering what your levels have been, and if you ever retest it? You are always so much help to all of us, and we appreciate.
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14 hours ago, Bergbrow said:
You’re so right. Dysfunctional ANS affects everything should be a banner on my wall.
You're right! Keep up the good fight!
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Hello, Just wanted to post a question to those who may be on acid-blocker medications with stomach issues (either H2 blockers or PPI, or even others such as antacids or sulcrafate if you have experience with those) and any side effects and ability to tolerate. Looking for one that may be easier to take. Thank you for any input
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1 hour ago, Pistol said:
@Amyschi I have HPOTS with severe GI issues and have been on Pantoprazole for many years. Despite being hyper medication sensitive I tolerate it very well and never had noticeable side effects.
Oh, thank you so much for taking the time to post this. It encourages me to try it. Along side the Hyperpots, I also have a longstanding chronic dizziness condition, and anything I have tried, even Pepcid, has effected me, but all one can do is try I guess. I have been trying to check patient review forums to see which one seems to be easiest to take (which is probably a mistake!), so this input is very helpful. Can I ask what your issues are like? My main issue is burning in the stomach, most pronounced after eating, but I have also been shown on EGD several years ago to have GERD and esophagitis (so how it relates to the POTS, I don't know, but do know that when the POTS is active, the stomach is much worse). Just wonder how it compares to your symptoms, Do you have gastroparesis? Hope not. (I think you might have said earlier, but sorry, I don't remember). Luckily, I don't seem to have that, just always upset. Think I may post a topic to see who is on stomach med and how it effects them! Thanks again.
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On 12/16/2023 at 1:32 PM, Bergbrow said:
No stomach upset, no nausea unless I force myself to continue eating. Might be neuro but odd that water goes down fine but anything more substantial, including soup requires an internal pep talk.
Wow, extremely glad for you as far as not having the stomach upset, as it is miserable on top of other symptoms, and interesting that your case would suggest a neuro basis underlying it. I just posted in another response what I was reading about, that when the ANS is dysfunctional, it affects everything. Thank you for response.
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3 minutes ago, Sea otter said:
I don't have side effects with this medication so far. I meant I had side effects with all the medications for POTS until now. I am taking 20 mg once a day. For how long, don't know, we'll see what will doctor say.
Thanks for clarifying, and continued good luck with it!
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On 12/16/2023 at 8:37 PM, RecipeForDisaster said:
I don’t have POTS, and am on 2 different beta blockers (day vs. night), so my HR is rarely that out of whack. I’m glad they aren’t using that for a metric - I once routinely got to a HR of 180 walking, but not now that I’m stabilized on meds.
I’m 43, and I don’t have much weight cushion, either. I was really thin until I had to start meds for trigeminal neuralgia, which put 20lbs back on me, and I’m almost a good weight again. I’ve been sick for about 15-20 years, but had some of this all my life - I just thought it was how everyone felt, and believed that everyone passed out sometimes.
Wow, I'm sorry, I know that's a long journey too. Not good that you developed the TN, so painful, but kind of a good benefit with the weight gain! Hope that at least is under control. Thank you.
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On 12/16/2023 at 10:43 PM, MomtoGiuliana said:
Yes the heartburn is during the flare when I have also lost my appetite.
Something goes on w my digestive system but it's never been anything diagnosed beyond "POTS".
Interesting, thanks, and you are right, I believe it is definitely connected. I was reading something that said if you have dysautonomia and vagus nerve dysfunction, it effects every system - the digestive system just doesn't receive the proper nerve impulses to digest food correctly. This was an article relating cervical instability (which I have) with vagopathy, but I'm sure it is true whether there is a structural cause or other cause of your dysautonomia. So many people experience even gastroparesis, unfortunately. Wishing you good luck with the med.
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On 12/18/2023 at 3:07 AM, Sea otter said:
@Amyschi I am on pantoprazole, from last week. I am also sensitive to medications and have side effects but for now everything is ok and it helps with acid reflux. I hope you will find something that will ease your acid reflux.
So glad you are tolerating it so far. Can I ask what side effects, as I am super-sensitive too. Also, your dosage and how long it was prescribed for? Thanks so much for response.
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On 12/14/2023 at 9:34 AM, Sea otter said:
@Amyschi similar happened to me. I noticed when I was in flare. I also have acid reflux lately and started to take therapy for reflux. Also when I have bad flare even slightest movement is making my heart to pound more.
Thanks much - reassuring to know at least someone has noticed this, and you're right, could have to do with the vagus nerve and/or close proximity of the heart to the esophagus (with the dysautonomia, it seems it doesn't take much to set things of;f; as you were saying, even the slightest movement - I notice that too). May I ask what acid blocker you are on? Does it bother you? I am super med-sensitive and everything makes me dizzy and increases the tachycardia. Desparately need something besides antacids, but don't want to add more side effects problems.
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On 12/15/2023 at 10:24 AM, MomtoGiuliana said:
Yes when in a bad flare I lose my appetite; I also experience nausea and sometimes bad heartburn I've never been diagnosed with gastroparesis. I typically lose 5-10 lbs within a month, which is a lot for me bc I am thin to begin with.
When the flare eases up my appetite returns.
So sorry that you have to fight that weight worry too. I feel sorry for those who need to lose, of course, but I think it is even more worrisome not to have the weight you need, as there is no cushion. Interesting on the heartburn - is that when you lose your appetite, or can it happen with flares only?? You have given me hope, though - thank you.
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On 12/14/2023 at 7:49 PM, RecipeForDisaster said:
I have homecare orders to get fluids whenever I need them. It took a lot of work to get it arranged, but I feel so much better knowing I can get them at home when needed. It wouldn’t just be because I can’t eat, but for a whole slew of problems to include that. Once I did not eat for 5 days, because I didn’t feel like I could, and was waiting until I got hungry. I never did. But I also could barely sit up, talk, etc. in those cases, I am definitely food averse. I can appreciate that something looks good and would taste good, and sometimes I even acknowledge that my body wants food, but I can’t imagine eating it.
So glad you can get them at home. True, even if my HR isn't super bad, could still use it. I can relate to being in that state at times, mostly bedbound with weakness. It is so scary now, as I am 64. May I ask your age? If not, its OK! I am hoping to start a thread on dysautonomia in older age. I'm imaging there are not too many of us, but I am curious. At my age, you start getting more into the population that has PAF or MSA, sadly, I would imagine. I developed my dysautonomia problems in my mid-40s and really noticed it in early 50s at the time of menopause. I imagine most of you started much younger, unfortunately.
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On 12/14/2023 at 4:00 PM, Bergbrow said:
I’ve had that aversion to food. I know I’m hungry but by the 1st bite it doesn’t matter savory or sweet, I almost can’t get it down. I try to chew it so small that I can drink it down with water. I look at my plate and I’m trying to convince myself to eat it. I just can’t get myself to swallow and sometimes have to take the food out of my mouth. Aversion is the right word for me too. I have not figured out why it starts. This has made my weight drop down by as much as 30lbs (which I need those 30lbs). It resolves itself usually when I finally get some stabilization of my symptoms. But, sorry I don’t have an answer for you on how to avoid or resolve. I’ve not eaten some of my favorite foods which should be the easiest things to eat.
Oh my, this is me exactly. I am so sorry you have gone through it too, but makes me feel a little better that I am not alone, and that you have improved. Unfortunately I have no margin to lose. Trying to get Boost and smoothies down. Curious as to whether you are suffering from stomach upset at the time? Or whether it is strictly neuro? Thank you.
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On 12/14/2023 at 8:43 AM, Pistol said:
@Amyschi I dont feel like eating when symptomatic or in a flare. To me it always feels like I dont have the energy to eat - like if I have to even get something out of the fridge it's too much for me. When my daughter was young this was a problem because I had to make meals but could not sit at the table with my family because I was too exhausted.
Yes, definitely the energy is a challenge too because of all the symptoms. I don't know how you did it with a little one, or all of you here that do. I admire that.
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On 12/15/2023 at 7:35 AM, MikeO said:
Well i can say i do not have a very healthy relationship with food and to some degree food adverse as well but there are plenty of reasons for it. this was so bad 2 years ago i would not or only eat once every couple of days which creates it own set of problems (trust me) still need to fuel the body. i was 20 lbs lighter during this time.
Not sure what a IV bag would do for me as every time i have been plugged into one was either for a procedure, ICU visit or ER visit and the only thing i noticed is that i would have to pee alot.
My DM trainer is a believer in the gut/brain connection when it comes to chronic issues. so a ANS discord at times?
Wow, that's hard Mike. I can relate. It is a lack of appetite along with the "aversion." It's kind of a scary symptom; thus my reaching out to the group. I believe it is the "discord".
HELP interpreting autonomic testing results
in Dysautonomia Discussion
Posted
I actually do have a Kardia, thank you for suggesting that. You just download the app and put it on your phone, if anyone is interested, and just place your fingers on the device and it takes the EKG; pretty easy, although quite frequently I do have trouble getting the signal, Only drawback, but in case anyone is reading and has that problem, I finally figured out that if you hold the device right up to your phone's microphone, it is much better. There is a paid level, where they offer a better 6-lead device and it also is programmed to allow detection of more abnormalities, but the basic will detect normal sinus, tachycardia or bradycardia for free.